With the goal of raising funds and awareness to improve care and find a cure for myasthenia gravis (MG), the Myasthenia Gravis Foundation of America (MGFA) is hosting the 2021 Coast-to-Coast Walk and 2740 Challenge on Nov. 13. The event, which will be held virtually this year,…
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A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest therapeutic needs, but one that is often left behind. Named the Institute for Life Changing Medicines, the project was…
The flexible endoscopic evaluation of swallowing-tensilon test (FTT), a new diagnostic tool for myasthenia gravis (MG), can be used to distinguish people with swallowing difficulties due to MG from those having similar symptoms caused by other conditions, according to a new study. The study, “Detecting myasthenia…
A new service, Bionews Clinical is seeking to bring more patients into relevant clinical trials by helping all involved — scientists, pharmaceutical companies, people with diseases — regard these studies as part of continuing care. “Today what happens is that the conversation about patients participating in a clinical trial is not…
Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to…
Treatment with Descartes-08, an investigational CAR T-cell therapy, markedly eased symptoms of myasthenia gravis (MG) in three patients participating in a Phase 1/2 clinical trial assessing the therapy’s safety and preliminary efficacy. “This is the first clinical trial of CAR T-cells for an autoimmune disease. Naturally, the first patients…
For the first time, a genetic risk factor for myasthenia gravis (MG) has been identified that involves a gene — AGRN — coding for a protein directly involved in the activity of neuromuscular junctions (NMJs), which are impaired in MG, researchers report. The study, involving the genetic analysis of more than…
The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS New York City Marathon, which will be held Nov. 7 both in-person and online. “Supporting charitable causes and organizations are a long-standing tradition of the TCS New York City…
Differences in gut bacteria composition in people with myasthenia gravis (MG) may be a promising avenue to explore in developing new therapies, a study highlights. Findings suggest that these bacteria might contribute to disease onset and progression, its researchers wrote. The study, “Gut bacterial microbiota in…
An inflammation-associated protein called calprotectin is present at abnormally high levels in the blood of people with myasthenia gravis (MG), a new study reports. Data also suggest that levels of this protein might correlate with MG activity and severity, but further investigation is needed, according to its researchers. “There…
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